It is with great sadness that we announce the sudden and unexpected death of Trustee Steve McKay from Newton Abbot in Devon. Steve suffered a tragic road accident on Thursday 1 December which rendered him unconscious and he never recovered, passing away on Sunday 4 December. Steve has been a highly-valued Trustee with the Nystagmus … Continue reading Steve McKay announcement
Author: Daniel Lewi
I am Dan and I joined the Nystagmus Network in 2016 as the Executive Information and Development Manager.
Request the bank details of the Nystagmus Network
Thank you for requesting the bank details of the Nystagmus Network. To make your donation or to transfer your fundraising directly to the charity please complete the short form below. Once you have submitted the form the charity’s bank details will be emailed to directly to you. Notice: JavaScript is required for this content.No … Continue reading Request the bank details of the Nystagmus Network
An overview of the The UK Eye Genetics Group Conference 2016
This weeks video blog features Dan giving an overview of the recent UK Eye Genetics Group Conference which was held on the 25th November. The Nystagmus Network was a sponsor of the event!
Discovering your baby has nystagmus
My daughter has congenital idiopathic nystagmus. Idiopathic means that despite having every test available no physiological cause can be found. Congenital means that it was either present at birth or very early on in life. I think I can pinpoint the day her nystagmus arrived. Lying on the rug in the picture above she is … Continue reading Discovering your baby has nystagmus
Peterborough Community Radio interview
This week the video blog at the Nystagmus Network features our very own Sue! The video is her interview with Peterborough Community Radio which is hosted by one of our very loyal and long standing supporters Tim Heywood. Sue and Tim discuss the Nystagmus Network, nystagmus and Wobbly Wednesday.
Sign up to ski!
We are delighted to announce the final dates and times for our skiing taster sessions for members of the Nystagmus Network! There are three different venues offering the group sessions and these are listed below. You can sign up by completing the form at the bottom of the page. Beginners Hemel Hempstead – 23 November at … Continue reading Sign up to ski!
Why is Wobbly Wednesday so important? Watch and find out!
Our latest video for our blog introduces Wobbly Wednesday, the annual awareness raising day for nystagmus! The video features some of our trustees, including our founder and chairman explaining why the Nystagmus Network is so important.
Charity rock and roll night
Jon and Rachael Sweeney organised a charity rock and roll night at their local social club on Saturday 29 October. Their son, Oliver, has nystagmus. They wanted to raise money for the Nystagmus Network to give something back after the support and information they received. Jon says: “I had never heard of Nystagmus until our … Continue reading Charity rock and roll night
A very wobbly unicycle ride
On Saturday 29 October young Research Orthoptist, Daniel Osborne, kicked off a whole raft of Wobbly Wednesday activities at the Southampton Eye Unit in real style by riding a 12 mile route around the town on his unicycle. Fuelled by dates, flap jack, fed to him at regular intervals by his stalwart outrider, Kathryn Greenhalgh, … Continue reading A very wobbly unicycle ride
Wobbly Wednesday – show your support!
Our video this week focuses on Wobbly Wednesday and why your support is so important! It helps us raise awareness of nystagmus and make it the topic of discussion for the day.